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Education for the Family: Frequently Asked Questions

A Heart transplant affects the whole family. Education is critically important for the most successful outcomes. 

For more information about the Heart Failure and Transplant Program at Children’s, or to schedule a consultation, call: 402.955.4350 or 1.866.467.9399.

We’ve also provided a list of frequently asked questions below.

How long will it take to determine whether transplantation is the right option for my child?

The evaluation process can take a few days or a few weeks depending on the situation.

What is the typically waiting time for new heart to become available?

Waiting time is variable and unpredictable. A new heart may become available within hours of listing, but it can also take several months.

What if I am uninsured?

A financial counselor will meet with you during the pre-transplant evaluation. If you do not have insurance, they will discuss your options (i.e. Medicaid coverage for your child.)

If we are facing an extended stay in Omaha, where can we find reasonable accommodations?

For those who have to relocate temporarily to the Omaha area, the Rainbow House provides accommodations close to Children’s. There is no charge to stay at the Rainbow House, but a donation of $10 per night per room is suggested.

How long does the transplant surgery typically take?

Several hours. 

What is the length of a typical hospital stay after transplant surgery?

The average post-operative stay is 2-3 weeks. You can anticipate about a week in the pediatric intensive care unit (PICU). Once the team feels your child is ready, he or she will be transferred to the 5th floor for continued care. 

What are some of the most common medications used after a heart transplant?

  • Immunosuppression medication (for rejection prevention)
  • Corticosteroid (for rejection prevention)
  • Antibiotics (to prevent bacterial infection)
  • Blood pressure medication
  • Anticoagulation medication (to prevent blood clots)
  • Diuretics (to help the body get rid of extra water)
  • Cholesterol lowering medication
  • Gastrointestinal (GI) protection medication (to prevent stomach ulcers)
  • Mineral supplements 

Since my child’s immune system will be compromised after the transplant, what precautions will be taken to prevent infection?

  • Your child will be placed in isolation in the PICU.
    • All visitors (immediate family) and staff will be required to wash their hands and wear gloves, a gown and a mask.
    • Your child will also be required to wear a mask whenever leaving his/her hospital room.
    • No live or artificial plants will be allowed in your child’s room.
    • New stuffed animals, games and toys that can be disinfected will be allowed into your child’s room.

Before discharge, what type of education will I receive so I can best care for my child at home?

You will be taught and provided information about:

  • Your child’s medications – Name, purpose, dose, frequency, side effects
  • Taking your child’s vital signs - A blood pressure cuff and stethoscope will be provided for you.
  • Nutrition – What is a heart healthy diet or a low bacteria diet? Which food should my child avoid?
  • Activity recommendations
  • Signs of infection and rejection

CPR-2 caregivers will also be taught how to administer CPR.

What are the possible complications after a heart transplant?

  • Hypertension (high blood pressure)
  • Abnormal kidney function
  • Rejection (The body’s immune system sees the new heart as “foreign.”)
  • Infection
  • Transplant coronary artery disease
  • Lymphoma (cancer of the lymph nodes)

What does the schedule of follow-up visits typically look like?

Initially, we will follow your child weekly, then every other week, at six-week intervals and then every three months.

Heart muscle biopsies are performed periodically during the first year after transplant. Usually a heart catheterization and biopsy will be performed every two years after that.

Should my child wear a medical alert bracelet?

The transplant team feels very strongly that your child should wear a medical alert bracelet. A water-proof bracelet, housing a programmable USB compatible memory card, will be provided for your child. Your child’s medical information can easily be updated and accessed from any computer.

After my child is back home, what condition warrant calling the transplant team?

  • Fever greater than 100.5 degrees
  • Nausea/vomiting
  • Abdominal pain
  • Skin rash/soreness/blisters
  • New lumps/bumps(neck, armpits, groin)
  • Change in skin color/change in moles
  • Fatigue/lethargy
  • Chicken pox exposure
  • Shortness of breath
  • Cough/congestion
  • Swelling (in face, arms, legs)
  • Changes in bowel/bladder
  • Anytime you have a question, concern or are unsure of something.

A transplant team member or the on-call cardiologist can be reached anytime at 402.955.4350 or 1-866-467-9399.

When can my child resume activity?

Your child will be encouraged to start exercising (walking) as soon as they are able to get out of bed in the hospital. Strenuous exercise should be limited for 6-8 weeks after surgery to allow time to heal and improve conditioning.

Are there any recommendation as far as pets are concerned?

Pets are allowed at home, but we do discourage cats in the home due to the risk of an infection called toxoplasmosis. Transplant recipients should avoid handling animal waste and cleaning animal/bird cages, litter boxes and fish tanks.